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Key to long term survival for Stage 4

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

The more I read, and based on info from this site, the key to long term survival for stage 4 colon cancer seems to be surgical removal of tumors.  Many people who get surgery also take chemo (before, after, or both), but those who aren't candidates for surgery seem to have a much worse prognosis.  Unfortunately, I do not appear to be a candidate for surgery, so my outlook isn't real good.  I think that explains a lot about how my oncs have approached my treatment, as opposed to how many on here get treated.  Makes me wonder if I should inquire about some surgical intervention, even if the oncs don't think I am a good candidate.

 

Tedd

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Sounds like maybe you are fustrated.

I am sorry.. my drs talked about surgey from the very first diagnosis.. I was always told what I had was operable and controllable once we found the mets.

Why did they not want to operate on your tumors? I wish i had something to offer you here... but you know nothing ventured nothing gained.. ask them about surgery.. you have nothing to loose.

Lovekitties's picture
Lovekitties
Posts: 2963
Joined: Jan 2010

Have you consulted one or more surgeons?  If not, that is my suggestion.

Surgery to remove tumors is definately a good thing as it removes the source from promoting further spread.  It is often followed by other treatments to control any stray cells which may be present in the body.

Never hurts to get several opinions and don't be shy about expressing your desire to do surgery.  If they say no, make sure you understand the whys.

Wishing you the best,

Marie who loves kitties

John23
Posts: 1832
Joined: Jan 2007

Re:
 "I do not appear to be a candidate for surgery, so my outlook
isn't real good.  I think that explains a lot about how my ONCS
have approached my treatment....."

Oncologists specialize in  chemicals, surgeons specialize in surgery;
why are you asking Oncologists about surgical procedures for cancer?

Make appointments with a few surgeons and get a few other opinions.

There are new surgical techniques, RFA, etc., that may be what you
really can use.......  Surgeons are usually much, much more objective
than most Oncologists!

Get some other opinions ASAP!

Better health to you,

John

Brenda Bricco's picture
Brenda Bricco
Posts: 556
Joined: Aug 2011

Hi Tedd,

I also sense frustration in your post... I am sorry that you have been told that you can not have surgery. My husband's first oncologist told us that surgery was not an option but we said we wanted to get the UW's opinion anyway half way through chemo. It turned out that once the chemo shrunk the tumors the surgeons were more than happy to go for the ulitmate ;a cure. My opinion is that not everyone is going to want to fight for your life, the oncologists are here to sell us chemo but what I have observed is that the best surgeons are out to cheat the cancer out of taking us. I am not suggesting that we should just willy nilly opt for someone to cut us open and take out huge sections of our vital organs but I am suggesting that you not let an oncologist tell you what a surgeon can do. If you don't get the option of surgery now it doesn't mean that you will never be a canidate.

I wish you GOD's blessings

P.S. It took RFA, embolization procedure, colon resection, liver resection and ileostomy put up and take down to get Dennis to NED. I pray you get other opinions.

hippiechicks's picture
hippiechicks
Posts: 340
Joined: Sep 2012

Hi Tedd

Not knowing much of your situation, but it does sound as if you could benefit from a second or third opinion.  It will not hurt to try.  Not sure where your tumor/s are, but perhaps going to either a major cancer institution with surgeons who see this daily or a specialist in your needed surgery, such as a colorectal surgeon vs. general surgeon if you have not already been to them.  

I have also heard many many stories of people being told they are not candidates but become excellent candidates after chemo for a period of time.

Sending positive energy and good luck to you!

 

jen2012
Posts: 1215
Joined: Aug 2012

I'm always a little amazed at how the appt with the surgeon differs from the appt with the onc. Sometimes wonder if they are viewing the same reports.

Hang in there Tedd. I hope you do find a surgeon that will operate.

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

Ted, I agree with a lot of posts on here. I'm being treated by U of Michigan Health System.  They have recently discovered two tumors in my liver (via an MRI). The process at UMHS is to send my case to a tumor review board (composed of surgeons and other doctors).  I am going today to talk to the surgeon to see if surgery is an option. Even if he says surgery is not an option I may pursue an appointment with John Hopins Liver Tumor Center as they specialize in this type of surgery. 

Good luck with the fight!!!

And God be with you

Phil

Sundanceh's picture
Sundanceh
Posts: 4306
Joined: Jun 2009

Surgery is our best weapon if we can qualify for it.  I've been fortunate to have 4 major surgeries...and no doubt, that has increased my longevity, although there was/is a price to pay from it.

Surgery and adjuvant treatments offer us the full pallate to fight with...but, they are no guarantee either...I had done surgery 3x...chemo those 3x...and radiation those 3x...and still recurred.

This last fight (in my 8th year) has put me back in a remissive state....major lung surgery / 6-wks rad w/5fu pum / 6-mos of Irinotecan...my onc kept me on schedule and kept my feet to the fire...I only had 2 off weeks for the entire year...so I was wore out.

But, I'm setting my longest record in a remissive state (19 mos)...than at any other time of my entire fight.

I agree with everyone that garnering another opinion could be beneficial for you...it will let you know how far one doc's opinion is from the other.....or not.

And that's a comforting thing...and if it not the news you want to hear...then it can spur you to perhaps even try for a 3rd one...

There have been many stories over the years here about folks who did not qualify...only to later qualify....it really opened my eyes to the possibilities that may be possible.

Ultimately, we have to fight for ourselves...I got to that point after 5-years of (mal) practice...which could have cost me my life...and I got another opinion...and then switched my care over to a now NCI institute with teaching hospital.

Had I stayed where I was at....I might not be talking to you today.

I often wondered about this....but now, I wonder no more.

-Craig

annalexandria's picture
annalexandria
Posts: 2271
Joined: Oct 2011

who had to consult with several surgeons before she found one who was willing to operate (in her case, she had distant lymph nodes involved...not sure why, but most surgeons don't want to operate in this situation).  She did finally get someone who would give it a shot, and has been doing well since that surgery (same month I had my last surgery...Dec. '11).  So far, she's lived about a year longer than her doctors anticipated.  Are you able to talk to someone who is a very experienced crc surgeon?  That might make a difference.  And as others have said, I really don't think most oncs know what is possible in the surgical realm.  AA

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I typed out one reply, but the site wasn't responding and I lost it.  I will try and recreate it, and give some more info on my case.  In June of 2012, I had a colonoscopy (due to symptoms consistent with IBS, IBD, and/or CRC which included multiple trips to the bathroom and triuble passing stools) and they found a tumor at the rectosigmoid junction.  It was large enough that the doctor couldn't even get the scope past it, so he had the colorectal surgeon look at it and took a biopsy.  When I woke up, they told me what they had found, and recommended a follow-up appointment with the colorectal surgeon in a couple of days.  A friend of mine was there with my wife, and he suggested I ask them to do a CT scan that day, as they would likely have to do one anyway prior to surgery.  The docs agreed, so I drank the contrast stuff and had the CT scan of my abdomen.  They sent me home, but I was in so much pain from the colonoscopy prep and drinking the CT contrast (remember, I had a major blockage of the colon) that I ended up in the emergency room at 3AM Saturday morning.  The colorectal surgeon decided that I needed to stay in the hospital and have surgery ASAP, which turned out to be Monday as they were waiting for me to pass everyhting out of my colon, plus it was swollen to like 2X nirmal size due to the colonoscopy prep.  Anyway, the plan was a laproscopic resection and reattachment to remove the tumor, with the possibility of a full incision and colostomy bag placement.  After about 30 minutes of surgery, the surgeon went out and told my wife that the tumor was not operable at all (it had spread out of the colon and was near my spine and bladder), and that all he could do was the colostomy and refer me to the oncologist.  He also mentioned that he saw some liver tumors and tumors in my omentum/peritoneum.  All of this was done at the local hospital in Kalamazoo, MI and not at any sort of large hospital specializing in cancer, mainly due to the blockage and risk of colon rupture.  Who knows what they would have been able to do different at a larger or more specialized hospital, but that is water under the bridge.   I then met with the local oncologist, and went to Northwestern in Chicago for a second opinion from an oncologist there.  Both seemed to agree that I was not a candidate for surgery, and also agreed on the chemo regimen (FOLFOX + Avastin).  Northwestern is supposed to have a cancer board (that I assume has surgeons on it) that reviews cases, but I have never talked to anybody there other than my oncologist.

As far as my diagnosis/disease, I have mets to both lungs, liver (one large, one medium, many small tumors on all lobes), LNs (not sure how many or where), and my omentum/peritoneum.  The tumors there have been described like grains of sand throughout the omentum.  However, the CT scan reports that I have read have never specifcally mentioned the peritoneal tumors (with regard to size) or anyhting in the liver other than the 2 bigger tumors.  The lung tumors are all 1 cm or smaller in size, and there are about 2-3 in each lung.  The tumor in the colon is also pretty big.  I did 12 FOLFOX tx and 10 Avastin tx, and the tumors had shrunk after 5 tx and then gotten slightly smaller after 12 tx.  I am off oxaliplatin now due to neuropathy after 12 tx, and am continuing on 5FU + Avastin.  It is compltely possible that my mets are so widespread that I am not a candidate for surgery, but I think I need to press that option and talk to some surgeons.  I am willing to try about anything at this point, as just doing chemo does not appear to be a very good plan for long term survival.  I will be going for more CT scans at NW in March and plan to really press my oncologist for more info and maybe even meet with some surgeons there to discuss my case.  I owe it to my wife and kids to do anything reasonable to survive this cancer as long as possible.  Thanks for letting me vent a little bit...

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

HI Ted,

I could never have guessed you had so much going on .. I can't venture a guess as to what to advise so I will just say i am praying you find some answers and some peace.. I am sure this is a stressfull perdicament.

Stay well..

Donna

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I forgot to mention in the 5 weeks post-surgery that I had to wait prior to starting chemo, my tumors grew "significantly", and the liver tumor had grown enough that it blocked my bile duct and I got very jaundiced (bilirubin was ~10).  I went to NW for a stent to be placed into my bile duct, but they were unable to do it via the endoscope procedure, so I had to stay overnight and get an external bile drain placed the next day, which is basically a tube placed through the chest and into the liver to the bile duct that then drains the bile into a bag that you wear on your leg.  I had this and a colostomy bag for about 4 months, when I finally went back to NW and got a stent placed into my bile duct via insertion through the drain line they had placed before.  At least I don't have two bags anymore!!!  

The surgeon that attempted my colon resection was a colorectal surgeon, but again the hospital where I had the procedure is not any kind of large research hospital or cancer center, so who knows how good/experienced the surgeon was (although he did a good job with the colostomy).  In retrospect, I really wish I had time to get a second opinion prior to that initial surgery, as maybe a more experienced colorectal surgeon would have done something more or different.  My surgeon did take out a few of the omental tumors for biopsy to make sure they were colon cancer in origin.  In all honesty, I got the distinct impression that once he got in there and saw what was going on he thought "holy crap, this is waaaaay worse than I expected", based on how he talked to my wife (and a few others that were there) during my surgery, and his interactions with me after surgery.  He seemed really shook up about the whole thing.  I wonder why they weren't able to tell more from the CT scan they did prior to the surgery.  It seems they should have been able to tell from the scan that I had an inoperable tumor, but maybe the thinking was that they had to go in anyway and do something to relieve that blockage, so they could take a look first and then decide what to do.  Anyway, I guess I'm just looking for any and all options to hang around as long as possible, and surgery seems to be key to that.  I will get a LOT more info out of my oncologists in the next few weeks, and may also start looking into getting a third or fourth opinion, and from surgeons and not just oncologists.  Maybe I just need to hear from more experts before I give up on the surgical option....

 

Tedd 

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Ted - Cancer is so insidious. We remain hopeful but it is difficult and frustrating.
Today I saw a pulmonlogist. We are scheduling a broncoscopy to check soft tissue
on right side of trachea. I am having this done at our local hospital rather than Northrwestern.
My reoccurence is in the liver but now the focus is a left lung met...
Will have broncoscopy to check "soft tissue " and a couple rounds of chemo.
They tested KRAS and I can do Folfiri.
My brain met was only one tumor and I scan early Feb., for that check.
Its all so overwhelming...Seek another opinion. I know it takes time to do this but you will benefit.
Keep moving forward!
Barb

vinaykumar
Posts: 66
Joined: Dec 2012

get another opinion and consider HIPEC 

tanstaafl's picture
tanstaafl
Posts: 977
Joined: Oct 2010

The surgeons want a surgery that is either curative or has good long term prospects.  

For my wife's 2nd surgery, a radiologist recommended surgery and that helped to turn around the most highly recognized surgeons after several others declined.  Also her CEA data, papers and scans convinced the accepting surgeon that her chemo might have or probably had stopped metastasis.  She uses light daily oral chemo, with lots of off label meds and supplements, every day except surgery itself.  High dose cimetidine still during surgery, and Celebrex (about 7-14 days per the surgeons) !

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

I mentioned this to my oncologist and he was not familiar with prescribing these.
Kind of frustrating.
There is a big difference in the thinking between surgeons and oncologists...
Barb

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

what a relief, hope at last.

ted, try hallwangen clin for opinion in germany, its worked well for me so far.

no surgery, no chemo and i feel and look better then ever.

alas i got no guarantees.

just my suggestion. you need serious money, like $120k for 3 months

hugs,

pete

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